Friday, January 24, 2014

I can't believe I didn't post about this! (this is good stuff, no whining!)

On December 27, 2013, I took this photo for my 365 (day 317 of my fourth year doing the 365days self-portrait project). The bit in italics is the caption of the photo over on Flickr.

The title of this photo is: "Say hello to my little friend... no, really, say hello!"

317 of 365 part 4: Say hello to my little friend... no, really, say hello!

Via Flickr:
This little guy is a Liberty ENG 32. I've been shopping around for a while, looking for a hearing device that I can afford and wear (because of the whole "sweat like crazy at the faire all summer" thing)... and here it is.

The big surprise for me was that I actually got to walk out wearing it! I expected to have to order it, wait a couple weeks, go back in... but no! Hearing aid technology has advanced to the point where you can get an affordable, reliable hearing aid basically "over the counter".

I can hear EVERYTHING!

I don't think I've stopped smiling yet!

Here are a couple blogs from June where I discussed the doctor visits- "What? WHAT?! I CAN'T HEAR YOU... no, really, I can't hear you" and "Let Grammy Patty get her ear horn..."

So, lemme tell you how this month has gone. Right after I got this way-awesome hearing aid, I caught a cold- my first cold in years. How many? I don't know, but the Nyquil I had in my cabinet was almost empty and in its expiration month. And the Disabled Guy was the last one who needed it. I can't remember having a cold for the last three or four years, at least.

So, after I recovered from my head and chest cold (it took three days before I felt fine and another two or three days to shake the last of the cough- I have asthma), I was able to start wearing it again. The thing I was looking forward to most was listening to music.

Did you know that when you listen with headphones/earbuds, you don't hear everything through both sides at the same time? Because I didn't. Being born deaf in one ear, I had no idea what "in stereo" was or how it was supposed to sound. In fact, till I was a teenager, I had no idea what was going on. It was in listening to Queen with those giant padded headphones that I realized something was amiss. Except that's just how it is... part of the sound comes through the right, part through the left. And sometimes, its through both... I really don't understand why. An audiophile would know what I was trying to say, probably even tell us the fancy-schmancy words for it.

Anyway, I rarely use headphones because it isn't good for your hearing and when I DO, I listen with it low enough to hear outside noises- or, you know, I used to- because my hearing is so damaged that I can't hear much of anything in general. (I used to wear headphones when I did my four-miles-a-day walk early in the morning and my volume was so low that I could hear traffic. Despite having first a Rottweiler and then a German Shepherd with me, I didn't want people to sneak up on me!).

But, let me get back to this little guy... I love a band called Steam Powered Giraffe. They have amazing harmonies and their vocal ranges are astounding. I would equate David Bennett's vocal range to Freddie Mercury (David plays "The Spine" in SPG). He can go way, way low and then give you an aural wedgie and crank it up to almost-shrieking-girl high. Don't believe me? Watch this video- "Me and My Baby (Saturday Night)" or his awesome cover of Rihanna's "Diamonds". If you're a fan, then you know. If you're not a fan, well, you should listen to "Go, Spine, Go" and hear that note he hits at the end.

Okay, let me take a breath... this is about how I can hear them now and not my total adoration of David "The Spine" Bennett's voice. And let me add- that's not to say that Bunny Bennett (who plays "Rabbit") and Sam Luke (who plays "Hatchworth") and Michael Reed (who plays everything) aren't fabulous and have great voices- they do. Here, watch this video too- "Hatch Fever" and listen to Sam's voice when he hits that note (you'll know which one).

Okay, okay... let me move on (again)...

So, here I am, sitting down and actually listening with my hearing aid- by the way, his name is Merc, for "Mercury"- and I actually get to hear them. I can tell Rabbit's voice from The Spine's, for starters. Unless the notes are super-low, then I'm not always sure if it is Rabbit or The Spine. Rabbit can get that low (like at the beginning of "Hatch Fever"), but doesn't do it very often. So, I can tell the Bennetts' singing voices apart now (they're twins, by the way, David and Bunny). I can hear the harmonies. Oh my sweet mechanical overlords- the harmonies!!!! This is what you guys have been hearing all this time? I thought they were awesome when I was only hearing half of what they actually are... I- I really don't have the words to describe how amazing their voices sound to me now.

At the end of "Mecto Amore", they're all singing the words "Mecto Amore", but they're doing it all different, over each other's voices. And I never heard David/The Spine in the background with that damn deep voice of his. The chorus through the song- I... had... no... idea.

In the last month, I've listened and re-listened to as much music as possible. And I've got a TON of music in the last couple of years. Not just SPG, but Amanda Palmer, Panic! at the Disco, Lake Street Dive, Flo Rida... so many more that I can't think of right off the top of my head. And sometimes, while I'm listening, I'm moved to the point of tears. I was missing so much. I was missing so much and had no idea. Perfectly content to sit here, oblivious to what truly amazing sounds I was missing.

The other day, I was in the grocery store and while I've been to the store since I've had Merc, this particular day seemed noisier than usual. It was a little crowded and when that's the case, when I get in line, I'm mindful of blocking traffic. People often end up approaching on my deaf side (not their fault, obviously) and I don't realize they're there till they nudge me. Well, now I can hear them approaching. And I was standing there in line, hearing people talking, carts rattling, the registers beeping, and the music over the intercom. Now, I knew they had music, but I had no idea it was a radio station. I thought it was just some weird "play music in the store" loop thing. But I could hear the DJ's voice and other radio noises. I ended up talking to the guy in front of me about how noisy the store was and how tickled it made me to just stand there and listen.

I end up walking around with a goofy-ass grin on my face because I can hear so much. And sometimes, I gotta wonder, how the hell you normal people can do this all the time. I know I'll get used to it (apparently, you  have to re-train your brain to deal with all the noise), but there's just so much day-to-day noise. Today, I learned that the "high wind advisory" we were having was real without having to look out the window. I could hear the wind whipping against my house. Of course, when I walked outside, all I could hear was the wind whipping through the hearing aid.

But so far, there hasn't been any downsides. Now, if you'll excuse me, I have some music to listen to and grin like a doofus about.

Wednesday, January 22, 2014

The irony of this is that I was too fatigued to finish it in one sitting...

I was looking something up related to fibro (pain in the hands, feet, and other "hot spots") and got stuck in an article loop of clicking "related content" on different sites and found this one (on WebMD). Which made me laugh for some reason.

From the article:

"With fibromyalgia, you may feel: 
♦ Fatigue on arising in the morning 
♦ Fatigue after mild activity such as grocery shopping or cooking dinner 
♦ Too fatigued to start a project such as folding clothes or ironing 
♦ Too fatigued to exercise 
♦ More fatigued after exercise 
♦ Too fatigued for sex 
♦ Too fatigued to function adequately at work" 

So, what WebMD is telling us- most fibro sufferers are TOO FATIGUED TO LIVE. Of course, if we believe the old Coca~Cola ads, extra caffeine is all we need to "relieve fatigue". But, caffeine can exacerbate our fibro symptoms... so we're too fatigued to do anything, but if we drink more caffeine, we're likely to increase our pain levels, causing us to be unable to do those wonderful projects...

Also- I don't classify "folding clothes or ironing" as a "project". A "project" implies that it might be fun or that it involves work and therefore a paycheck. Unless you're a maid or work in the dry cleaning industry, folding and ironing clothes isn't a project. I'd call it a "task" or "something I'm not doing". Yeah, I don't fold laundry. It sort of piles up in the clean basket till I wear it again. And "ironing"- I call that "fifteen minutes in the dryer".

But this list... I was fatigued after reading it. I think I reached the point where "fatigue" almost has no meaning anymore. I'm not "tired". I long for tired. "Tired" means you've had a good, solid day of work and that you're worn out and will sleep well because of it. "Fatigue" means no matter how much sleep you get, you have no energy to do anything. Exhausted, but awake. Awake, wildly awake with a forgetful brain that won't stop racing with thoughts about everything from: "Did I turn on the dishwasher after I managed to load it?" to "I like that Cumberbatch fella too..."

In my clicking, I also found this article about wrist pain. And the part that got me was this: "You may feel aching, burning, numbness, or tingling in your palm, wrist, thumb, or fingers. The thumb muscle can become weak, making it difficult to grasp things. Pain may extend up to your elbow." The thumb muscle can become weak, making it difficult to grasp things.

Or, you know, like in my case- I can pick something up and seconds later, send it skittering across the table or counter-top because I've lost my grip on it. And that doesn't really hurt, not in the sense of the usual pain, anyway. Yesterday, I spent all day picking things up, dropping them, picking them up again, and then accidentally flinging them when my hand decided to lose its grip on them. Yesterday, my wrists were sore like I'd sprained them, but I hadn't. And this morning, I woke up and my wrists were fine. Well, not fine, but they weren't hurting in the middle of the tiny bones like yesterday.

As for the title of this blog post- I WAS too fatigued to finish this post when I started it this morning. And here I am, twelve hours later, finishing it up... why twelve hours?

Because I completely blanked on the fact that I'd started it. I forgot it was here and in need of finishing. So, while I'm absolutely fatigued and can't seem to keep a grasp on anything- I also forget when things need to be fini

Saturday, January 18, 2014

The New Normal- NO! This isn't normal!

I read an article- and I don't remember where- about how things become the new normal. When you have a chronic illness, you fight for a while, then it overwhelms you and you accept it. And then, that thing is now "normal" in your life.

I've had to accept a lot of crap as "normal".

Born deaf in one ear. There are so many little things related to this that are difficult to explain. From having to adapt by focusing on people's mouths when they speak, to having a speech for each teacher on the first day of school as to why I had to sit up front. Always Normal.

I started going grey at 17 years old. I eventually started dying my hair every four weeks. I haven't seen my natural hair color in at least ten years. Probably more. Fine. New Normal.

Blood pressure pills every day? Fine. New Normal.

For more than three years in my 30s, walking with a cane was normal.

My feet went bad and I can no longer wear cute, girly shoes like strappy sandals or high-heeled pumps. Fine. New Normal.

Pain in my hands made it almost impossible to hold a pencil (or any drawing/art tool). I had to stop drawing and painting. Fine. I went back to the photography. Normal.

The pain I've dealt with in my feet is so normal to me that I don't remember what it feels like to not have sore feet. And now here we are... another new normal. For weeks now, I've had a terrible pain in my right hip. And it isn't arthritis- I know arthritis pain. It is definitely the fibrofuckingmyalgia. It hurts the most after I've been still for a while. Sitting, standing, in bed- wherever I've been still. Those first few minutes after I move again are agony. An example: this morning, I had to get up from this desk, go take the rest of my stay-alive pills and get breakfast. I cried from my desk to the kitchen from the pain. I tried heat on it and it felt great- till I moved. I tried ice, but that just made me hurt more and in a larger area. Some days are worse than others, just as some days are better than others. But those bad days- those bad days have no business existing.

The bad pain days are bad enough- right? I mean, pain sucks. And pain that pain meds don't even touch is worse. But on top of the shriekingly bad pain, I get more emotional. The stupidest things make me weepy. Things that have no bearing in my life. Commercials. Movies I've watched a dozen times over. Song lyrics. And it doesn't even have to be the whole song- it can be as simple as just a line in a song. (here's an example- this song- "A Way into Your Heart" by Steam Powered Giraffe- kills me every time. And the video even more. The line: "Lately, your love of life has been fading..." rips my heart out. Oh, and if you really want your heart thrown against a wall, listen to "Turn Back the Clock" on that same album).

Where was I before I started crying at that song? Pain, that's right. Always about the pain.

The New Normal has become daily pain meds. I've been having to take pain meds in the morning lately. And at night (as usual). I'm contemplating doing my muscle relaxers the way I did them for faire- three times a day instead of just in the morning and night. Right now, my prescription for the muscle relaxers is one pill in the AM and two in the PM. During faire days, I take one in the AM, one again at noon, and then one at night before bed. Same dose, just spread out evenly.

But I don't want to make that the new normal. I hate the new normal. And there isn't much the doctors can do for me. The weather is a huge trigger for me and aside from living on the space station, there isn't any way to control my atmosphere. Here's our weather for the last several weeks- cloudy daytime, clear as a bell nighttime, snow, clear skies but bitterly sub-zero temps, humid and cold, humid and warm, rain one day, snow the next. We have a snow-blower, which makes things easier in general, but I'm still in agony when I'm done. Usually radiating from that pain in my hip. (right now, my whole body aches from pushing the snow-blower around).

And I hate to say it- but there have been days where I have wanted to go outside and take photos, but I know how I'll feel if I do, so I didn't go outside for photos. That means I let the fibro win. And I hate that. Because if I keep doing that, then it will become the New Normal. But, there have been days where I forced myself to do SOMETHING. I can't miss every opportunity. During that week we were getting -30° Fahrenheit for our high temps of the day, people kept posting links to the frozen bubble photos on my Facebook (18 times in less than a day). I couldn't do it because on top of those bitter cold temps, I had a cold. My first chest cold in YEARS. And since I'm also an asthmatic, I couldn't go outside for long periods of time. When I took the dogs out, I had to cover my mouth and nose with a scarf.

I felt like I was going to rob a stagecoach every time I went outside. There were fifteen days when I didn't take any photos other than my 365days self-portrait. (and some of those were absolutely awesome, because dammit, I needed an outlet!). I did a lot of themes from a group I'm in called "We're Here!".

I'm going to share a few of them as links, just so it doesn't clog everything up with huge photos (like my snow-removal rant two weeks ago).

Day 325- A Nighttime Portrait

Day 331- Binary Red (the theme was "Binary Love", so we had to do something related to binary code). This photo is my most popular photo on Flickr. Ever. In the first 24 hours, it had over 7500 views. This was a last-minute inspiration and it worked out great. As of the typing of this sentence, it was at 10,601 views. I cried when it hit 10,000. Because, you know, emotions and pain. (I'm selling prints of this photo in my Etsy shop)

Day 333- Rockin' Out I put my own twist on the "heavy metal horns".

Day 337- The Doctor Will See You Now The theme for this was "Twisted Flickr" and I am now officially out of red food coloring. And there's a comment on that photo by "Studio d'Xavier" that made me cry. This was also a last-minute inspiration, like "Binary Red" was... and it turned out great too.

Day 338- Setting things on fire Because sometimes, you gotta spin some burning steel wool to feel better.

So, despite being trapped indoors by the weather and fibrofuckingmyalgia and general ennui, I did manage to be creative a little. And also- because I can, here are some random snow-related photos.

And, here's some size reference for how tiny those snowflakes were...

I've also become obsessed with how the birdhouses look with snow falling all around them. I've taken many photos like this one from New Year's Eve.

And here's one from today-

And, a Christmas ornament in the snow (from New Year's Eve)-

And... one from today-

Wednesday, January 1, 2014

It sweeps! It clears! It removes dust, dirt, and snow! YES! SNOW!


What amazing item am I speaking of?

Why, it's the magical, incredible, AMAZING BROOM! That's right! Just a normal, everyday broom and guess what!


*Photo courtesy of Pahz, from 2010, yes, I know I'm Pahz, but
c'mon, this makes it look legit and shit, right?*

Now, don't be alarmed! The broom is not going to hurt you. And you shouldn't be afraid of it and what it can do...

Let me begin by saying that I loathe housework. I hate it all in equal amounts, I don't discriminate when it comes to hating housework. HOWEVER- as much as I hate housework and try to avoid it as much as possible, I am aware of what a broom is and how it works.

Why am I telling you this in my fibro blog? Because I have a pet peeve and I need to share it. Part of that pet peeve is that, while I have a chronic pain disease- I can still manage to do certain things... like, say, clearing the snow off my vehicle before driving it.

There is no excuse for driving a vehicle around like this-


Why? Aside from having an obstructed view from not clearing your rear window, THIS is what happens when you don't clear off the top of your vehicle-

And that, kids, is a hazard to whatever poor sap got stuck driving behind you and your lazy ass.

You have no excuse! You see, this stupid fibro thing makes my entire body hurt. If you're a regular reader of my whinings, you know that sometimes my body hurts so much that I can barely get out of bed. Sometimes, just parts of my body hurt. And today is no different. Today, my skin aches like I have a full-body bruise and my lower back is bothering me. I can't stretch- you know that thing you do when you're tired? You stretch your arms out, yawn or make a loud groaning noise... that. I can't do that anymore. It hurts too much.

And in previous bitching posts I've made about this topic, I mentioned that I did all this snow-clearing while walking with a cane. At one point, my knees were so bad that I had to walk with two canes. Two canes! I would lean one against my vehicle and remove the snow while leaning most of my weight on the other cane... and using that free hand to clear snow. And the Disabled Guy? He's paralyzed on his right side! He can't use his right hand or arm, and he still manages to clear off his vehicle! What the hell, man? You really have no excuse.

Now, that brings us to TODAY. I've been inside for almost an hour now and the cold I endured while outside has settled into my muscles and have made me so stiff I can barely turn my head to the side.

So, with my sometimes-debilitating chronic pain, I took this truck-

And made it into THIS-

"HOW DID YOU DO THAT!? ARE YOU A WIZARD!?" I hear you say, with amazement in your voice.

Yes, I am a wizard. AND THIS IS MY WAND!


However... as amazing as that is, I actually did not use this particular broom on my truck today. You see, they actually make specialized brooms for vehicles.
("NO WAY!" Yes way! TOTALLY!)

Here's one-

And, then there's this one!

I got mine at Walmart. You can get them at almost any store- be it the small-town destroying Walmart or the hardware store down the street where Old Man Geezer counts the nails and grumbles about "kids these days". (I just happen to live in an area where the Walmart empire has stomped the hell out of Old Man Geezer's lawn).

I used that second brush on my truck today. It isn't just a broom (with an ice scraper on the opposite end), it actually telescopes out to about four feet long. That's good news for people like me- I'm short (5'4 1/2" tall) and I have short arms (I didn't measure them, but they're proportionate with my short stature). With this amazing and magical tool, I turned this truck-

...into this truck-

I know what you're thinking... you're thinking: "One- I just saw those photos, and two- why are you showing us the same photos?" Would you like different photos? I can do that... let's see, you've already witnessed the magic of my amazing broom removing the snow from my mid-sized, four-door pickup truck. How about some before and after photos of the Disabled Guy's full-size pickup truck?




I know what you're saying- "What are those footprints around that full-size pickup truck? Are you saying I have to get out and walk in the snow?"

Well, yes. Unfortunately, everything we were told in school that we'd have in 2014 was wrong. "Flying cars", "pills as food", "robot maids", "self-snow-removing cars"... what? That last one? Just me? Well, I did go to school in Alaska. Unless you have a non-rusting robot maid to do it for you, you will have to put on a coat and go outside to do this yourself. But it isn't that hard! I've already explained the whole "I used to walk with two canes" and "now I have a robot knee and a chronic pain disease" and "hey, the Disabled Guy can only use one hand" thing, right?


Even if you DON'T have this fancy-ass snow brush made for vehicle clearing- most definitely have one of these- Or, at least a version of this (there are others that look different, shaped differently, but they all have the similarities of "bristles" and a "handle").

So, c'mon, guys... don't be this guy-

Now, I've cleared off two vehicles, one mid-size pickup truck and one full-size pickup truck, and I dragged the snow-blower around my driveway in a half-ass fashion, and I've written this blog post. My fibro has caused all my muscles to tighten up and I dread standing up (which I'll have to do soon). Because on top of all that, I still have to go to the store.

But at least my truck is cleared off.